Saturday, February 26, 2005

But for the grace of God go I....

Things have been growing on my mind of late. There are a great many people who read my postings that already know differing fractions of what I'm writing of tonight, and there are also a great many people who know nothing of it at all. In such a post I will look first to those who know nothing of my situation.

My parents are both genuine Dutch stock. My mom was on the boat at a year old, and my dad flew over when he was eight years old. From the Brouwer side of the family came the red hair and freckles that my siblings all posses, and from the van Breda side came the blonde hair and tanned skin that I claimed. As the good "pure bred" Dutch that we are, we siblings have the typical blue(ish) eyes and long limbs. We inherited a lot from our parents: the Dutch money-sense (aka cheapness), the ability to worry over everything or worry over nothing (take your pick depending on which of us you're talking to), the inability to really excel at athletics, and the love for family.
There is something else yet that we have inherited through our dad, which is far from the "joy" of blonde hair or blue eyes, and yet is just as traceable: the 50% chance of having Huntington's Disease. At age 55 and after nearly eight months of waiting at the top of the list, my dad will be moving into a nursing home this Tuesday due to the wonders of Huntington's.
In 1983 or shortly around the time of my birth, my parents found out that my Oma had been diagnosed with a hereditary disease called Huntington's. Because my Oma and Opa lived in BC and the last time I recall seeing them I was four, I wasn't aware that my Oma had anything at all until I was in grade six. My dad had decided to get tested for various reasons: he couldn't hold a job for more than a short period of time; he became very poor with money-management and made several very bad investments; his personality and demeanor (while formerly cheerful, funny and happy) became quick tempered, defensive and almost rude; he was beginning to trip on things regularly. He tested positive, and the afternoon that he and my mom sat us down to explain this to us I had no way of comprehending what it all meant.
It did a lot to explain the beahviour and outbursts that we had been seeing from him with increasing regularity, the fact that this change had a name to it, but beyond that I was lost. They told us that each one of us now had a fifty percent chance of having HD (Huntington's disease) and that, if we wanted to once we were 18 we could be tested for it. Not very appealing for a 12 year old to think about.
I felt as if I had the weight of the world on my shoulders as I helped mom around the house, as my brother and I tried to be the soothing balm after the raging storm of my dad had passed through, always utterly upsetting someone in the house. I remember thinking to myself, they say that the teenage years are supposed to be some of the most difficult years of a person's life, how is it fair that in addition to all the normal events of anxiety that other girls go through, I have to deal with this, too? I wasn't aware at that point that other families actually had problems too. They all looked perfect.
I watched as my dad lost his driver's license, as he went of full CPP disability, and as he seemed to sink into a world where he was priority number one and everyone else, even his own wife and children, followed after. I knew that the cause of this was HD. What I saw was a full grown adult man picking fights with my mom and being more selfish than his teenage children. A disease like HD is a hard thing for a child to comprehend.
When I was in high school I did a project in our "death and dying" portion of Health in PhysEd on HD. I learned that it was a degenerative neurological disease, which basically means that if you have a certain repetition of something in your DNA, the neurons in certain areas of the brain degenerate, resulting in uncontrolled movements, loss of intellectual faculties, and emotional disturbance.
My dad falls a lot right now. He's got a wheel chair that he uses more and more, because it's becoming very difficult for him to maintain any balance. He has visible chorea (uncontrolled jerkish movements of the muscles) and is quickly losing control of his small and large motor skills. It is often very difficult to understand what he is saying when he speaks, and he chokes on most of the foods that he eats. He's still prone to fits of temper, perhaps now more than ever because every day life is becoming more and more frustrating for him to do.
Some people question the idea of putting a 55 year old man into a nursing home, and perhaps rightly they should: it is not a natural thing to do. However, in the questioning of such an action they should also endevour to understand why such an action is being taken, and then empathize with both him and the care-giver. It's time for my dad to be in a home; it's time for both him and for my mom, who has spent more of her life being a caregiver than not-- first her children and then her husband.
It then brings, once again, a new dynamic to our family life, but one that we shall adapt to in due time. By the grace of God we've survived thus far and I don't see that ending any time soon.

On a similar note, I have not been tested for HD and I should like to leave that for another post at a later date. This one is too long as it is.

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